2009 Winter Newsletter

A Publication of the National Kidney Foundation of Kentucky

Winter 2009

PEOPLE LIKE US AND END THE WAIT! People Like Us People Like Us (PLU) is a growing movement to empower, educate and encourage people to become effective advocates. It includes: The Patient and Family Council (PFC), which works to ensure that kidney patients receive the best care possible and supports family members and caregivers; the National Donor Family Council (NDFC), which supports donor families and works to increase the sensitivity and effectiveness of the organ recovery process; the transAction Council, which promotes a better quality of life for transplant recipients; and Living Donor Council and potential living donors, for whom the NKF is a leading source of information and support.

How can YOU get involved? There are many ways to get involved with PLU. The easiest and most informative way is to go to your local meetings. Currently, the NKFK holds meetings in Louisville at the Clifton Center on Frankfort Avenue every third Thursday of every month. To attend these meetings, please call Lisa Allgood at [email protected] or 502.585.5433. If you’re interested in meeting in the Lexington area, please contact Charissa Cook at [email protected] or 859.533.6575. PLU also offers an email program, People Like Us: Messages of Hope, which shares personal stories of those on the Patient and Family Council Executive Committee. These messages tell how they faced challenges related to life with CKD, transplantation and donation. To read sample stories, go to www.kidney.org/ patients/pfc/messages_hope.cfm. To receive the PLU: Messages of Hope, you can join any of the below listed councils by visiting their websites: Patient and Family Council, www.nkfkidneypatients.org; transAction Council, www.transplantrecipients.org; National Donor Family Council, www.donorfamily.org; Living Donor Council, www.LivingDonors.org

END THE WAIT! The goal of NKF’s END THE WAIT! Campaign, launched in January of 2009, is to eliminate the waiting list for kidney transplants in 10 years. Continues on page 5…

A Message from the Executive Director,

Lisa Allgood

Individual gifts of any amount continue to be the lifeline for non-profits. Even in the current economic climate, Americans still want to support organizations that do great work. If you are considering a gift to the National Kidney Foundation of Kentucky that is meaningful to you, please see below the options for gift giving. One of the best ways to help kidney patients and transplant recipients and continue kidney disease prevention education is through a financial contribution. Your gift means we can continue our programs and services that have made us the statewide experts in kidney health. Here are some ways you can make a gift: Donate Online. Make a secure donation now by credit card to the National Kidney Foundation of Kentucky at www.nkfk.org. Click the Donate Now button. Donate by Mail. Send a check to support our programs and services. Donate by Phone: Make a credit card contribution or pledge by phone. Memorial or In Honor Donations. Remember/ honor a loved one or friend, honor them on their birthday or transplant anniversary, etc. Gift of assets: Such as real estate, works of art, life insurance policies, tangible property and securities/ stocks Estate Planning/Will: Consider including NKFK in your Will Financial contributions last year allowed the NKFK to: ●Provide free kidney health screenings to 1,000 participants through our Kidney Early Evaluation Program (KEEP) ●Teach 400 school age children about kidney disease prevention and organ donation ●Provide professional and public education

Lisa

Mark your Calendar! Upcoming Events Program Events

Special Events

People Like Us 3rd Thursday every month Clifton Center, Louisville

National Kidney Month World Kidney Day March 11, 2010

KEEP Screening January 30 - Paris February 24 - Owensboro March - Louisville Call to set up your appt!

Gift of Life Gala Henry Clay, Louisville March 20, 2010

Kidneys in the Classroom: Call to schedule a visit Statewide Treatment Options Class: Stage 4 Kidney Patients 4th Thursday every month Louisville Breckinridge Inn

NKF Golf Classic Lake Forest, Louisville June 2010 Information Soon About: Ride Out Loud Bike Ride Winefest of the Bluegrass 10th Annual Kidney Walk Dean Kutz 5k Race

Call 502.585.5433 to make an appointment or for more information about the programs.

Save The Date! You’re invited! The Gift of Life Gala has been set for March 20th, 2010 at the Henry Clay on 3rd Street in Louisville. For more information, please call the NKFK at 502.585.5433 or email Abby Johnston at [email protected]. For more information on the Henry Clay, please visit their website: www. thehenryclay.com.

fe i L f o Gift la Ga Photos by Neil Shields

NKFK Chapter News

Bowling Green The Bowling Green Chapter held their 3rd Annual Ride Out Loud Bike Ride at Chaney’s Dairy Barn on August 16th. The event was a great success with over 130 riders coming out to support the NKFK. The chapter and presenting sponsor, The Medical Center, provided great volunteers and services to this year’s event. Well done!

Lexington The Lexington Chapter held a NKFK fundraising event, WineFest of the Bluegrass on August 8th at Gainesway Farm. Guests enjoyed wine, liquor and beer from eight local vendors, while the presenting sponsor, Porsche of Lexington, gave away a ‘Porsche for the Weekend,’ among other auction items. The Chapter met on Friday, October 23 for its last meeting of the year. We discussed End the Wait, KEEP Screenings, Living Donation and the UK Transplant Center, Team Kentucky and the US Transplant Games. We also discussed the TAKE ACTION NETWORK (www.kidney.org/takeaction) and encouraged people to sign up to become an advocate. The next meeting will be on January 22, 2010.

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Need Ideas for Holiday Gifts? My Child Needs A Transplant, Now What?

Jessica Owen was born with a liver disease that one day would lead to a liver transplant. Authors Tandy and James Owen felt stranded without a road map when their daughter was diagnosed. The Owens relate in My Child Needs a Transplant, Now What? how they and their adolescent daughter, Jessica, bravely pioneered new and terrifying territory that included three transplant surgeries, multiple near-death experiences, and last-minute, heaven-sent miracles; and they felt they were doing it all alone. By reading this book, they want everyone to understand that even in the darkest times, faith and strength will get you through. To order, go to www.tatepublishing.com.

Give the Gift of Life

Common Questions & Misconceptions About Organ & Tissue Donation What do I need to do to become an organ donor? The first step is to talk with your family. If your family is aware of your choice, the decision will be much easier when the time comes. Next you should sign the National Donor Registry. This is a nationwide list of donors and ensures that your wishes to help others will be carried out through Kentucky’s First Person Consent law. I signed my drivers license, do I need to sign the National Donor Registry too?

YES! If you have not renewed your license since the summer of 2008, you may not be on the Na-

tional Registry. Unlike other states, Kentucky did not add names to a national list to ensure credibility and first person consent. Signing the registry will only re-affirm your desire for organ donation. Will my quality of care be less if the nurse or medical team knows I am an organ donor?

NO! All patients will receive equal care regardless of their decision to become an organ donor. Organ donation becomes a concern with the medical team when death occurs, and not before. Also, the transplant team is separate from the medical team who administers your care.

Will I still be able to have an open viewing funeral if I am an organ donor?

YES! Removal of organs and tissues will not interfere with customary funeral

arrangements. No alteration in the donor’s appearance will occur and this includes all organ and tissue donation.

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Welcome New NKFK Board Members! Daniel Haddix Director of Quality Assurance, UPS Airlines I chose to join the NKFK to support the organization’s goal to increase tissue and organ donation and awareness. I received a liver transplant on April 10, 2006 at Jewish Hospital in Louisville. Looking forward to joining the board members in fundraising and meeting its mission and goals. Dan has already volunteered and participated in our 2009 Dean Kutz 5k Race for Organ & Tissue Donation Awareness.

Dominick D’Urso Aircraft Division Maintenance Division Manager, UPS I chose NKFK because my father was a kidney transplant recipient. I know the struggles that patients and their families have to endure to deal with CKD. A goal of being a part of the NKFK BOD is to assist in the efforts to help people in our community make the most of the resources that are available to them in dealing with kidney disease. The NKFK is an important part of the community. The support that was provided by the Kidney Foundation to my father and family where we lived helped us a great deal, and I look forward to being able to provide help to others any way I can through the Foundation. My wife Candee and I have been married for 22 years and have three children; Nickalas 20, Amelia 17, and Maria 12. Dominick volunteered for our 2009 Dean Kutz 5k Race.

Stephanie Lanham Director, Norton Physician Services I chose to become a part of the NKFK because my grandfather battled with Kidney Disease before he passed away a number of years ago, so I have experienced it first hand. I hope to be able to raise awareness about Kidney disease and educate the public about its’ prevalence. I think far too many people are unaware of kidney disease and how many are affected by it. I also want to encourage the public to consider organ donation and giving the “gift” of life, which truly makes a difference! I have been married to my husband, Todd, for 5 years and have two children; Makena, 4 and Sawyer, 2. Stephanie also served on our Walk Committee where she recruited sponsors and gifts for the 2009 Walk.

Robert “Rusty” Wells

Senior Account Executive, Neace Lukens I chose NKFK to help educate as well as personally help those needing assistance with kidney diseases. My hope is that others will benefit from our service. The NKFK means there is hope for the future for anyone suffering or who may suffer any kidney ailment! I am married to my best friend and beautiful wife Mary Ann for 18-years with two equally beautiful children William Harrison Wells (son) and Meredith Hunter Wells (daughter). 4

1. 2. 3. 4. 5. 6. 7.

Ways to Give this Holiday Season

Send in a donation to the NKFK Donate in memory or honor of someone Purchase tickets to our upcoming Gala (March 20th, 2010) Sponsor our programs and events Give the gift of life. Become an organ donor (www.donatelifeky.org). Purchase flowers through www.ourgift.com and 10% will go to the NKF Purchase online gifts through iGive.com and automatically donate to the NKF (go to www.nkfk.org for more info)

People Like Us and END THE WAIT! Con’t from cover story…. There are four components to this initiative, and public policy advocacy is vital in accomplishing each of them: 1. Improve Outcomes of First Transplants Improved Medicare coverage of antirejection medications is an important step towards reaching this goal. Therefore NKF is advocating for legislation to provide continued Medicare entitlement for NKF’s Legislative Action Center these drugs for kidney transplant recipients beyond 36 months postprovides the latest information transplant. about legislation and policy relating 2. Increase Deceased Donation to chronic kidney disease, transplanWhile NKF is opposed to providing financial incentives for organ tation and donation. donation, we want to be sure that organ procurement organizations have the discretion and funding to assist donor families with exBy going to www.kidney.org/ penses directly related to the donation, which may include some takeaction, you can sign up to refuneral expenses. ceive action alerts which will allow 3. Increase Living Donation you to easily communicate to your NKFK has maintained that living donors should not personally bear Members of Congress on any costs associated with donation. In addition, NKF believes that these issues. living donation can be increased by removing disincentives that living donors face. Members of Congress have been working on three types of legislative proposals that address these concerns: A. increasing ability to obtain health insurance post-donation; B. the Living Organ Donor Tax Credit Act which would provide a nonrefundable federal income tax credit of up to $5,000 for expenses incurred in connection with living organ donation that have not been reimbursed; C. amendment to the Family and Medical Leave Act to allow time off from work for individuals who provide living organ donations. 4. Improve the Donation & Transplant System The NKFK strives to improve this system by eliminating regional variations in access to transplantation and follow-up care (more efficient) and eliminating racial disparities in donation (equitable).

TAKE ACTION Network

People Like Us Advocating for END THE WAIT!

Among the most vitally important components needed to accomplish NKF’s goal to END THE WAIT! for a transplant in this country are NKF’s People Like Us advocacy activities. By sharing their personal stories of kidney disease, waiting for a transplant, or donation, PLU members demonstrate the reason why NKF launched this campaign - so that we can do our absolute best to support the patients we serve, as well as the living donors and donor families who make transplantation possible. Since the launch in almost a year ago, more than 2,000 People Like Us advocates have sent letters and met with Members of Congress asking for support for legislation, including a federal income tax credit for direct expenses incurred by living donors and Medicare coverage of needed immunosuppressive medications for the life of a transplant. These are essential legislative components of END THE WAIT! Please visit www.kidney.org/endthewait to learn how you can become a People Like Us advocate to help END THE WAIT! through the public policy goals described in this article. Information retrieved from RenaLink, Fall 2009, Vol. 10, No. 3

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PLAN

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GAMES

proudly presents the U.s. transplant Games.

A . TR

plant es

Team Kentucky News U.S

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National Kidney Foundation

Jointhe Team Kentucky! Foundation is a voluntary health agency dedicated to preventingkidney

and urinaryKidney tract diseases, inproving The National Foundation U.S. Transplant Games will be held in the health and well being of individuals Madison, Wisconsin July 30-August 4, 2010.

and families affected by these diseases the availability of all and up. Team Kentucky is lookingand for increased new recruits age 18 months organs for transplantation.

There is a sport/activity for everyone.

The Foundation has presented the U.S.

Team Kentucky membershipTransplant is open toGames organsince transplant 1990. recipients, donor families and living donors.

Join team

To learn more, attend our Team Meeting on Kentucky December 6, 2010 at 3:00pm at the U.s. Kentucky Broadcasting Association 101 Enterprise Drive transplant Games Frankfort, KY For meeting details, call or e-mail

National Kidney Foundation Contact Team Manager: of Kentucky Lisa Allgood send e-mail 800-737-5433 or [email protected] to: [email protected]

or call lisa allgood, team manager 502-585-5433 This is a great opportunity to meet 1-800-737-lIFe (5433)

If you thought it was too late to get involved in Team Kentucky, just read on about a Louisville native who has inspired us all. Kim Estep-Lampley won 5 gold medals and set 4 world records at the 2009 World Transplant Games in Australia in the 50-59 age group. She won all medals in swimming categories (freestyle, backstroke, and individual medley). Ms. Estep-Lampley is a twotime kidney transplant recipient (1989 and again in 2000).

fellow recipients, donor families, living donors, and supporters meetings are informational and no and2008 learn about being a part of a very special Team. July 11-16,

us Pittsburgh Venues

obligation or commitment is required.

team Kentucky is organized by the National Kidney Foundation of Kentucky and other coalition organizations as a service to transplant recipients, living donors, donor family members, and the professionals, friends and Honor your loved one who has family kidneymembers disease or is asupport recipient of an organ transplant who them.

burgh, Pennsylvania

Commemorate your loved ones

by making a donation to the National Kidney Foundation of Kentucky in his/her name. You may also commemorate your loved one who has passed by donating in memory of him/her. All donations will be announced in our quarterly newsletter, Kidney Connection (see page 10). Your kind donation will continue to help those who are affected by kidney disease and end the wait for organ donation. If you are interested in making a donation, please send your name, address, honoree’s name, announcement, and donation to the following address: National Kidney Foundation of Kentucky 250 East Liberty Street Suite # 710 Louisville, KY 40202

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Beauty is...

When you se e their smilin g faces. Just looking at th by e picture yo u can see th happy to be e ir alive. These people have transplant. T had a hey stand th ere happy e though they ven don’t know what’s going happen to th to em in the fu ture. With th just being ali em ve now is wo n derful. The youngest me mber of the Team Kentu Transplant te cky am is Riley h e is a two ye boy who had ar old a heart tran splant. Riley’ ents are very s parhappy and th ankful he is and with us alive today. The li ving and non donors that -living gave their o rgans to the ple so they c se peoould be alive now are hero Giving them e s. another cha nce to live. Transplant G The ames are he re so people share their st can ory. Some pe ople have ha their transp d lant for ove r 20 years. S how happy th eeing ey are is wha t beauty is. By: Sarah C rouch, daug hter of Kidn ey Recipient Jim Crouch

Give the Gift of Life, Con’t from p. 3

What can I donate? Donors can choose to donate all or some of the following organs: kidneys, heart, lungs, liver and pancreas. Donors can also donate tissues including corneas, skin, heart valves, bones, saphenous veins, and tendons. You can save and enhance up to 50 lives by becoming an organ donor. Will my family have to pay for my organ and tissue donation?

NO! All costs related to organ & tissue donation are paid by the organ procurement organizations (OPO) in each state. Kentucky’s OPO is known as the Kentucky Organ Donor Affiliates.

What if I change my mind after I become an organ and tissue donor? By creating a profile online (www.donatelifeky.org), you can specify which organs and tissues you would like to donate. If you change your mind about any, you can go online and update your profile. You may also contact KODA at 1.800.525.3456. For more information on organ donation or to sign up, please visit www.nkfk.org, www.donatelifeky.org, or www.kyorgandonor.org. 7

NKFK Fundraising Events

2009 Walk Re-Cap! Another Walk has passed us by and this year we

raised almost $25,000 through team and individual donations alone! We had over 300 Walkers come

out to support the NKFK and its mission to prevent kidney disease and to spread awareness.

Thank you to those Walkers who went far and

above their personal fundraising goals and to the Team Captains who led their team through months of fundraising!

Recipients Top Dialysis Team Fundraiser South Central Kidney Beans Top Team Fundraiser Miles for Zoey Jade Top Individual Fundraiser Donna Bothur Largest Dialysis Team DSI Largest Team Miles for Zoey Jade

Join the (your location) Kidney Walk Thank you to all our Date Location Time Sneaker Sponsors! kidneywalk.org | phone number

Plehn’s Bakery Pictures by: Traci Gould with Team Miles for Zoey Jade 8

Dean Kutz 5k Race for Organ & Tissue donation Awareness

2009 Race Winners Men

Women

Overall 1. Drew Knott 2. Kevin Finnegan 3. Michael Mudd

Overall 1. Katie Prince 2. Andrea Rouse 3. Nancy Burgess

20-24

Drew Knott

14&Under Erica Shuler

25-29

Shaun Cowherd

15-19

Rikako Nakano

30-34

Jeramy Kazlauskas

20-24

Nicole Alderson

35-39

Michael Mudd

25-29

Katie Prince

40-44

Joe Hinkle

30-34

Dana Brawner

45-49

Will Ashlock

35-39

Nancy Burgess

50-54

Kevin Finnegan

40-44

Stacie Kutz

55-59

Clarence Jordan

45-49

Jeanne Padilla

60-64

Jeff Sherman

50-54

Debra Harper

65&Over Chris Brodehl

55-59

Beth Hensley

60-64

Beverly Leslie

SPECIAL THANKS to all the volunteers who helped tirelessly for

the Kidney Walk, Dean Kutz 5k Race, Winefest of the Bluegrass and Ride Out Loud Bike Ride. Huge thanks to the Committees for the extra hours of work and many times entertainment! As said before, our organization would not exist if it weren’t for our amazing volunteers and we greatly appreciate each of you! 9

In Loving Memory… The following individuals donated to the National Kidney Foundation of Kentucky in memory of loved ones from June 24, 2009 through October 31, 2009. We are very grateful for these thoughtful contributions and wish to express our sympathy to the family and friends of the deceased. In Memory of Patricia Aldrich Janet Connell

In Memory of Betty Collins Margaret & Edward Pohlgeers

In Memory of Carl Boles David Sinclair

In Memory of Joyce Doeker Donald & Alma Hans Claire Merman

In Memory of Willie Brown Renal Advantage, Inc. In Memory of James “Jim” Cecil R.L. & Judy Allender Leon & Jane Bennett Amy Bickett Bruce & Martha Blair Doug & Sue Borders Gamie Brown Patrick & Judith Bullock Phillip Bullock Carol Carlisle Loretto Casper Carole Clifford Jesse & Mary Pat Cole Phillip & Patricia Davis Edward & Norma Delmenhorst Frank & Terri Desensi Ron & Margaret Dischinger Michael & Helen Feeney George & Mary Ann Feger Patricia Ferrell Michelle Frisbie Mary Gleason Lane & Mary Josette Goulet Kenny & Gail Hagan Louis & Dorothy Hall Mike Hasselbring Kevin Hayes James & Mary Ann Higdon Roger & Barbara Howard Edward & Agnes Jury Arthur & Catherine Kopp Raymond & Sharon Kuhn Susan Law Jack & Joan Luckett Katherine Lyons Steve & Allison McCombs Michael & Pamela Minter Dana Paglina Donald & Ann Ransdell Janet Reddington Lana Riley Olivia Sleadd Nina Stack Raleigh Swift Stanley Talesnick L.H. Toebbe William & Janice Wiedandt Royce & Linda Bailey

In Memory of Roena Earles Jennie Patterson In Memory of Norma Eberle Mike & Sue Lutz In Memory of Duddie Eleerle Margaret Fleck In Memory of Emily Gaddie Lori Poole In Memory of Harman Aaron Montgomery In Memory of Donald King Joel & Jualita Jones John & Betty Williams In Memory of Norma Kircher Eugene & Dorothy Byron In Memory of Dominick LaVera Joseph & Anne French Mary French Shelli Koestner David & Patricia Peterson In Memory of Mildred Lukas Jane Eppich Gail Martinko Laura Zanewicz In Memory of Ruby Mangold Doris Harrison In Memory of John Markham Mattie Sanders Southern States

In Memory of Lula Nalley Diana Britton In Memory of Charles Nonweiler Baptist Healthcare System, Inc. In Memory of Dennis Pearl Joseph & Suzanne Thornton In Memory of William Peck SuZanne Troske In Memory of Clarke Potter Dana & Richard Roby In Memory of John “Jock” Rueger Janet Scott In Memory of Roger Shepherd George & Beth Blandford Brian Brohman Ronald Butt Matt Campbell Creative Alliance Susan Dallas Stephen & Sara Deetsch Phyllis Dries DeeAnna Esslinger Robert & Sandy Glasford Eric Gregory Michael Grisanti Kenton & Rhu Hayes Melanie Henry James & Mary Jo Heppner Debbie Hudson Antoinette Linville Nancy Stephen The Vimarc Group In Memory of Virginia Tighe Anthony & Marie Roche In Memory of Beulah VanArsdall Eckler-McDaniel Funeral Home

In Memory of Stan Marszalek Marilyn Bland

In Memory of Laura Vestal Brett Beaverson

In Memory of Vejbai Champshi Maru Judith Alender Dr. R. Wathen Medley Ohio Valley Nephrology Associates, PSC Ohio Valley Nephrology Office Staff Joann Risner Randy Spaw & Kimberly Johnson Mike & Karen Thompson

In Memory of Bobby Willoughby Wanda Hobbs

In Memory of Egene Morgan Curtis & Rebecca Cunningham Jeffrey & Arlene Klinker Dorothy Morgan

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In Memory of W.T. Young Hoy & Beverly Blackburn In Memory of Edith Zedonek Virginia Berry

What: DONORAMA American Red Cross Blood Drive When: December 29 & 30 12-7pm Where: Crowne Plaza, Louisville In need of volunteers to work the NKFK table at this event. There will be two shifts, 12:00 - 3:30 and 3:30 7:00. We are hoping to have 2-3 volunteers per shift. Volunteers will be signing people up for the Donor Registry and promoting the NKFK. Each volunteer will receive a tee shirt for helping!

Attention Volunteers!

The NKFK is in need of volunteer assistance with database entry. If you’re interested, please contact our office at 585-5433 or [email protected].

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Lexington held the first “Glitz & Glam” Fashion Over Lexington at Bakers 360, sponsored by Simple Sophistication Event Planning and Jerame Stephens Photography. The event brought together the seasons hottest fashion from the best of Lexington’s clothes boutiques while raising awareness for kidney disease. The night was a huge success, raising almost $3,000 for the National Kidney Foundation of Kentucky. Thanks to everyone for contributing to the success of this event!

Our organization could not function without our faithful and motivated volunteers. Volunteer for upcoming NKF opportunities to help spread awareness: Fundraising Events Program Assistance Clerical Work NKFK Ambassador Gala KEEP Screenings Mailings Promote the events WineFest of the Kidneys in the Stuff gift bags Distribute info to Data entry Bluegrass Classroom local businesses Ride Out Loud Public Policy Filing Recruit new donors, Kidney Walk Answer phones Campaigns - People sponsorships and Dean Kutz 5k Like Us volunteers For more information on how to volunteer at the NKFK, please call 502.585.5433 or email [email protected]

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Board Members Bill D’Antoni Janet Connell R. Scott Cornell, MD Jim Crouch Jan Day John Dewey Dominick Durso Dan Haddix Tina Kauffman

250 E. Liberty Street Suite 710 Louisville, KY 40202 (502) 585-5433 (502) 585-1445 (fax) www.nkfk.org

Stephanie Lanham Jeff Leonard Michael Parlier Sanford Reikes, MD Ashley Roberts Robert “Rusty” Wells Staff Lisa Allgood Executive Director [email protected] Abby Johnston Special Events Coordinator [email protected] Charissa Cook Programs & Community Outreach [email protected]

Yes! I would like to receive the Kidney Connection Name _______________________________ Address _____________________________ ____________________________________ City ________________________________ State _______________ Zip _____________ Email ______________________________ Please complete and send to: National Kidney Foundation of KY 250 East Liberty, Ste. 710 Louisville, KY 40202 Or email Lisa Allgood at [email protected]

OR Visit us online at www.nkfk.org!

Contact the National Kidney Foundation in your area, donate online at www.kidneycars.org or call us at 1.800.488.CARS

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